Confused again!

Lisa-Nana to 5
Lisa-Nana to 5 Member Posts: 16
in Breast Cancer #1

Well, I'm back again with more confusing news. Back story: DCIS 2008 bilateral mastectomy and latissimus flap reconstruction. No treatment since it wasn't invasive. Found lump in axilla in June 2016. DX August 5 with IDC. Started Femara in August. MRI in December showed tumor shrinkage on largest . MRI in August had shown slightly less than 2cm. December MRI showed slightly less than 1cm. At surgery 2/21/17 it was actually 2cm. . I had a smaller tumor (8mm) on medial side of same breast. Decided on total mastectomy on right side. I saw my MO today and got my surgical pathology report. My biopsy path report showed ER+PR+HER2-, but surgical path report says ER+PR+ HER2 unequivocal. I had a repeat mastectomy, which removed my reconstructed breast including the flap and implant from 2008. They took 23 nodes/1 positive with no vascular invasion. We are waiting on the FISH test for the HER2. MO is now saying she recommends chemo after all but is going to wait on fish test and even then It's still up to me. I'm so confused as I thought with the oncotype dx score 12 on biopsy tissue, I was good to go on just Femara. Seems now chemo is back on the table and I have to decide. The side effects scare me really bad but if it's needed I want to be sure I do all I can to beat this this time around. Anyone with a low oncotype score (12) but node involvement?  Did you do chemo anyway? 

Comments

  • Mariangel43
    Mariangel43 Member Posts: 79
    #2
    node envolvement, intermediate risk in oncotype

    Hi, Lisa-Nana to 5, I am sorry about your recurrence.  I also have an intermediate score on oncotype but I decided not to have chemo.  According to stats, the benefits was an added 8 percent on disease free survival. I still have to work, have to walk to my work site everyday and also have to run a program alone.  The burden chemo would put on me was too heavy and the benefits too low.  I selected radiotherapy; RT gave me a 12% increment on disease free survival, not on overall survival. However, the two ROs I visited wanted to do conventional therapy with me.  Too much radiation increasing my chance of getting a lung cancer due to radiation. Besides, the 40 gray, 16 fraction treatment is as successful as the 50 Gy, 28 fractions or 60 Gy, 33-35 fractions for breast cancer tx.  So I opted out. I am on anastrozole since day 1.  Had simple mastectomy on right breast; clean margins, encapsulated and no vascular invasion; up to now, no growth on right side. I am also in antioxidants; the cancer antigens are in normal levels.

    The other breast showed a cyst and an enlarged nodule near the sternum on U/S sonography. I am still waiting for the authorization for a lung CT to rule out lung cancer.  My oncologist surgeon didn't let any tissue (clean margins) on the right breast so I was quite relaxed on that part.  I had an implant because if I put tissue on the right side, the risk of regrowth might increase. If for any chance, I develop cancer on left breast, a mastectomy is in sight.  I know my doc will send me to a biopsy. 

    I only had 1/3 nodes with a micrometastasis.  Axilla is still clean. I didn't let anyone do a full node dissection because I am scared of lymphedema and I need to work.  I have right dexterity and I need my right arm fully functional for writing in computer, handwriting and all stuff we do in an office. If I do RT, I won't let anyone radiate or boost my axilla. There is an added 40% of increment of lymphedema development with RT. But if I have lung cancer with breast cancer, I will do chemo. 

    Maybe chemo has softer s/e this time.  One thing I learned thru this cancer journey is that some cancers are curable; others go into a dormant stage until stress, food, and other factors awaken it.  I believe and hope someone can hear me in my pledge of developing new tx with less s/e for breast cancer.  

    I would like to hear how are you doing.  My best wishes,

    Maria

  • Apaugh
    Apaugh Member Posts: 850 Member
    edited March 2017 #3
    Stage I, no lymph involvment. Double mastectomy, HER2 +

    4 rounds of the chemo, followed by every 3 weeks of herceptin, will be complete in July followed by 5 yr. pill for now.   It is rough, but I am almost done. 

     

     

  • Lisa-Nana to 5
    Lisa-Nana to 5 Member Posts: 16
    edited March 2017 #4
    Thanks ladies.

    I'm still waiting on my FISH test results so that may take the decision out of my hands anyway. I'm so afraid of chemo but I think I'm beginning to be more afraid of not doing all I can to try to prevent another recurrence. The first thing I thought of when my MO suggested chemo was how confused my grandkids will be when nana is sick and bald (they are 6,5,4,2 &1) but then I thought how much worse it would be to have to explain why I have to go away forever. I know there are no guarantees either way, but I'm starting to think I might need to be more agressive especially since it seems my tumor might have grown even while I was on the letrozole. And made it into one of my nodes. And the reason I had a total axillary dissection was because there was no breast tissue so a sentinel node wasn't possible, per my surgeon and second opinion surgeon. I guess I'll just have to be extra careful with the lymphodema issues. 

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited March 2017 #5
    I was not afraid of chemo

    I have no idea why, I think I was just naive.  My oncotype score was high, so I didn't even have to think about whether to do it or not.  In hindsight, I often wonder if I actually could have avoided it, but I have no regrets.  I was 63 at the time, so not a young woman.  I don't know what I would do today as I am approaching my 70th birthday.  Whether I "needed" chemo or not, I'm glad I did it because I would always wonder if I had a recurrence.  You have a low score, but you have had a recurrence.  That low score only means that your odds of recurrence are low - it doesn't mean it's zero.  And you've already had a recurrence from what was non-invasive and not supposed to rear its ugly head again - yet it did.  Lots to think about.  How about a second opinion?

    Suzanne

Discussion Boards